With EoE, Allergies, Asthma and a G-Tube

Support

What can friends and family do to help or be more supportive? What would you like them to know about tube feeding?

We recently did receive help. We received so much help from friends, family and even people we didn’t know. It was all started by my sweet friend Jessica.

When Gage got his feeding tube there were a lot of unknowns and very high emotions during that time. The very last thing we wanted to hear from our home health was that Gage’s formula wasn’t covered. Our home health manager was a friend as well. He felt horribly about it. He said in 8 years he had never heard of a child with a feeding tube not get coverage. Figures it would happen to us. He informed me through them it would cost $1780 a month. WHAT?! He had found it at a local grocery pharmacy for $40 a can. Gage goes through one can a day. Forty times 30 days is $1200. I wanted to slam my head in the door. The insurance rejected coverage because the formula can be bought over the counter. However, you must have a doctors scrip to get it at a pharmacy.

I tried to fight the insurance company. They fought back. We had good insurance too. We aren’t the only EoE family this has happened to. It happens quite often. There is some help out there. Some states have passed legislation stating that health insurance has to cover medical food for feeding tubes. There are also reimbursement programs through the various formula companies. Neither of these were an option to us.

My sister-in-law was able to give us their extra cans of formula. Both of our parents helped out some too. Then one day I receive a phone call from my friend Jessica. She says to me that she would like to do a fundraiser for Gage to help cover our formula costs. As awkward as it felt I agreed. It was a funny feeling after hanging up the phone. Are we really a family that needs a fundraiser? We are. It’s so strange to say that out loud. I have been dealing with this disease for almost 3 years now. Jessica suggesting a fundraiser helped me to step outside my bubble and take a look at my family from another point of view. Wow. I have a special needs family. It’s taking some getting use to now that I am seeing things that way.

Jessica made up some pamphlets and started her fundraiser. A week went by and Jessica and I decided she would surprise me with the results. Then my sister-in-law calls and says so and so is going to mail you a check. Why I asked. She replied “Because of the fundraiser”. Really? What Jessica didn’t realize that by putting the fundraiser on facebook our entire families and friends could see it. As the next week went on more people had contacted my sister-in-law saying they wanted to help. Jessica and I had spoken at the end of the last week and she was so excited with the turn out she had gotten.

Nathan and I are just blown away. We are never ones to ask for help of any kind. Now in our time of need, we can not believe how selfless and generous people are. I truly feel we are loved. Family members, old friends and new, came to our side to help us through this hard time. Even people we don’t know helped us. I wish I knew the right words to express our extreme gratitude. This support lifted our spirits, we needed that.

Thank you all.

One day when our kids are older I plan to share this wonderful story with them. I want them to have the selfless giving heart that those who helped us have. We will pay it forward and I will teach them what it means.

Jessica,

Thank you.

You have no idea how much your fundraiser has helped us once that snowball got rolling.

Our family

I’m the average stay at home super mom. Run the daily grind of raising two boys and two girls.

I love coffee, dancing, painting and teaching my children how to grow into the best people they can be.

All three of my oldest kids and my husband have Eosinophilic Esophagitis, multiple food and environmental allergies and the kids all have asthma. Our youngest does not have EoE but does have some strong environmental allergies and chronic urticaria. More recently the boys were also diagnosed with Elhers Danlos type 3.

Dealing with these issues daily is hard but we still LIVE life to the fullest. Nothing holds us back. We play sports, visit animal farms, go out to eat on occasion and travel. We LIVE!

I have started this blog in hopes of helping other families dealing with these issues to see the brighter side of life. Let them see they are not the only ones. By sharing how we LIVE and handle certain situations we hope others will be inspired to try to do the same.